Undoubtedly the most severe and life-threatening of my illnesses, my trials through the affliction that is Vasculitis is still very real and present. I have tried my hardest to be regular and authentic in the last two years as I tackle the effects of this illness on my life. Yet here I am surprisingly for the first time since the first symptom to share exactly what this illness is and what it means.

My bad for not doing it sooner. Seriously.

If you are coming in from this story a little bit more recntly than my last seizure or stroke then I can assure you that you will discover the whole story below.

Vasculitis

Vascul(ar) – (Latin) relating to, affecting, or consisting of a vessel or vessels, especially those which carry blood

Itis – A condition involving the inflammation of

Vasculitis is a condition in which a vessel or vessels which carry fluids throughout the body become inflamed. Most often the inflammation is localised to a particular system within the body and so takes on specific features. This happened with me and my Cerebral Vasculitis (also known as Cerebrovascular Disease).

Other forms of Vasculitis are associated with Temporal Arteritis, serumsickness,Henoch-Schonleinpurpura,andKawasaki’sdisease. Vasculitis can be a common implication of many autoimmune diseases such as Polyarteritis Nodosa and Wegener’s Granulomatosis. It is important I mention these because they are not dissimilar to Systemic Lupus Erythematosus (SLE) and other autoimmune diseases in varying ways. Not only this, but often people with one autoimmune illness are diagnosed with multiple autoimmune and mixed connective tissue diseases. I am a good example of this already with my dual diagnosis of SLE and Rheumatoid Arthritis.

My troubles with this illness began in 2013 and it was aggravated dramatically by me and my life choices. I was in the process of finding my life direction and recovering from a severe bout of depression which I identify as ‘My Breakdown’. During this time I had been completing my Certificate III in Education Support, preparing for a full-time enrolment in a Bachelors Degree of Education at a local university and trying to build up some work as a mobile yoga instructor focusing on physical rehabilitation and injury recovery.

I cannot be too chronological on the manner events happened or the symptoms as they appeared because my memory is hazy. As the year neared the end and I settled in to the new process of university life I started to experience increasing situations where I would lose the ability to speak and think in a systematic and logical way. I could think 1 and 5 but couldn’t find 2, 3 or 4. My speeches would become disjointed mid sentence and I would drop in completely unrelated words or freeze altogether. I often forgot who people were, where I was going or how to do something I had been doing for years. Decision making and situation safety assessments became a skill from the past that was not available for me. I can tell you some time between July and September I was in a minor car accident as I blacked out whilst driving.

Yep it was all fun and games.

The diagnosis took months and was very difficult. A stay in hospital for December 2013 helped get the big tests out of the way, and nothing showed a confirmation. It wasn’t until I had a partial stroke that the doctors were able to confirm my condition. This is an important side note because regardless of how good your team is, and how many tests you have, the answer can still slip under the radar. At three crucial points they tested me for CV, and even immediately following the partial stroke I didn’t present with CV symptoms. It was only a complete disproving of all other alternatives throughout various treatments that was able to show the answer.

Cerebrovascular Disease, and Vasculitis, are caused by numerous factors and can present in a range of ways dependent on the location of inflammation.

Image from ColoradoArthritis.com

The main thing to note are these facts:

Inflammation is a protectivetissueresponse to injury or destruction of tissues,whichserves to destroy,dilute, or walloffboththeinjuriousagentandtheinjuredtissues.

Inflammation in a blood vessel can be temporary, partial, excessive or complete. As fluid is prevented from the typical flow the area it feeds will suffer due to the starvation of their requirements.

The location where the inflammation occurs will either resolve itself or not.

The inflammation may be cause by an injury and subsequent clot blockage. It is important to note here that this can be a very dangerous situation, as a clot that breaks off in the blood vessels and travels around the body may have a fatal impact.

If the inflammation creates a build up and solidification of fluid ( called a mass or lesion) at specific sites for an on-going period of time, the repercussion of the swelling is that the growing mass may cause damage to the part of the body it is pushing on.

I normally enter word origins and meanings for the biological and medical terms of my conditions, and usually that is enough for a diagnosis post, but here I want to elaborate on a few more.

Cerebral – (Latin: cerebrum) Of or pertaining to the brain

Clot – a Haemorrhage or build up of platelets in the blood to prevent excess fluid loss

Platelet – Cell found in the blood, essential in clotting and assists in autoimmune response

Vessels – The ‘tubes/pipes’ through which fluid passes in the body. Not only blood but other fluids can also pass through these vessels to carry cells throughout the body.

So I have Cerebrovascular Disease, or Cerebral Vasculitis.

I have ongoing inflammation of the blood vessels in my brain that reduces the flow of blood to my brain and results in masses building up, pressing on the various regions of my brain and inflicting havoc on my brain functions.

Due to this illness I have had a partial stroke, partial focal seizures, transient ischaemic attack (TIA). Curious to read more? You’ll just have to stay tuned!

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OMG! I just spent over an hour replying to this very educational post. my damn internet keeps going out for some reason. oh, I am fuming. I don’t have it in me to type all that again! I just want to thank you for this very important post. You may have just given me the answer to one of my problems. I wish I had it in me to type it all again, but I don’t. Maybe I could get to know you and everything I just lost would eventually get said. I cannot even tell you how mad I am. Thank you! Tammy

Tammy that has happened with a few of my posts recently and I’m sorry to hear you lost it. Its such a strange manifestation of an illness, it presented so differently in my and I was undiagnosed for 8 months. I didn’t realize it was autoimmune but as I learn about it I realize it is such a strange thing that I’m not surprised. I love getting to know new people and I especially would love to hear how you go with this from here!

One of the things I had written about is the fact that I have that exact same thing with my speech, slurring my words and forgetting what I’m talking about and it’s happening more and more often. The first time it happened I was hospitalized and ended up in ICU. The second time it started happening, I thought I better get to the hospital before it gets really bad like last time. The ambulance came and got me and the doctor in the ER wouldn’t let me explain to him as to why I was there because it wasn’t so bad yet and I tried to tell him that if he would just let me talk a little bit, it would happen. He told me to just skip the story and get to the point. I was sent home. It’s happening more and more and it’s really worrying me because that is most definitely not normal. I just told my son about that, right now again, and he said if had known that or been there with me he would have gone off on that doctor. He also just said that he notices me all the time slurring my words, forgetting what I’m saying, can’t find the words I’m looking for. Apparently it’s happening more than even I’m aware of. This Vasculitis could be the cause of that and my avascular necrosis in my hip. now my son is worried that I’m going to have a stroke. The first time, though, they did eventually do a CT scan to look for tumors or to see if I had had a stroke and they said they didn’t see anything abnormal. I’m just so thankful for you, your blog. I at least have a word to throw out there when I’m at the doctor’s office and we’ll see what happens. I don’t see my rheumatologist til June, but I see my primary care doctor every 8 weeks because she manages all my medications because it was getting confusing with so many doctor’s prescribing things. I’ll bring it up before I let anyone do a hip surgery of any sort on me. I could have a stroke during the surgery. I’ll surely keep you posted. Have a nice night, or day wherever you are.xx

I would first suggest not to jump to conclusions, it just stresses you out needlessly. There are levels of strokes and even if you had one worrying wouldn’t help.

If you have a GP you can trust, good, if not find one. Take someone who has seen this in action. Document times, longevity, dates and situations before/during/after, even how your reflection looks (swelling or redness and if its on one side). No detail is too minor and mild aches, tics, twitches are important. Tell the receptionist you want a half hour appointment when you book with a doctor. Request MRIs as CT is better for only something’s. I know vessels in the brain show well on MRIs and variations of them. Definitely do it before surgeryperhaps discuss this with the referring GP? I hope this helps, but if you want to chat further you can PM on This Lupus Life Facebook page too.

Thank you so much for this information. I was telling a friend today that no one is touching me, surgery wise, until I get my feeding tube replaced on the 31st, my lab work is all okay. I tend to almost always have a low WBC. It got critically low at one point I almost had to have a bone marrow biopsy. I’m going to have this speech thing checked out before surgery for sure. I’m a nurse, so I know what that meant they would be looking for. But, I have been really worried about this speech thing. Today when I was talking about it, my son said mom I notice it all the time, so apparently I don’t even notice sometimes. Now, that is scary. I think I’ll just take him because he’s the one that saw me the 1st time it happened. I was on the phone trying to talk to the pharmacists and you couldn’t understand a word I was saying. He heard me in here and ran out from his room and asked if I was okay and I said no, I didn’t know what was happening and my oldest daughter rushed me to the hospital, I was admitted, almost died, and no one did anything about it. I’ve mentioned it to several doctors and they just kind of blow it off. I was thinking that maybe I should go to a neurologist? What do you think about that. I am just really scared because this has been going on for probably a year or so and it happens a lot. I’m no longer able to work. I wasn’t a doctor so I don’t know everything, just enough to scare the crap out of myself. Do TIA’s show up on MRI or CT scan, can’t remember. Thought you might know. I’m worried that I may be having TIA’s and I know that people have TIA’s and then the big one, the stroke! People in my family have died of strokes. Needless to say, they were much older, but it’s still something I have to be concerned about. I do twitch quite often, I’ve been noticing. Now I don’t mean like ten times a day or anything like that. Maybe a few times, here and there. Not necessarily every day, either. I’ll start paying more close attention to the twitching. I shake, too. I have all over body aches all the time, but I have over 20 physical diagnoses. Thank you so much, you have been a great help and I really appreciate your helping me. I wouldn’t have known any of this had I not run across your blog yesterday. So, glad I dedicated all day yesterday devoted to reading other’s blogs. It sure paid off. I would like to keep in touch if you don’t mind. Hope you had a “good” day. Take care. 🙂

Haha Your posts came to me while I was in hospital so you kept my mind off things -which is good. Neurologist I would say. They are the way to go. What city of what country are you in? I love my Neurologist and Neuro-immunologist (such a smart fellow to have a double specialty!) I’d say get sweetly pushy with the docs. Hospitals I think can take things to a certain point, but if you are sweetly-pushy you can get so much further and don’t let them leave unless you have names and contacts of people who are going to take it further. I operate on a ‘teacher’s pet’ basis, I am super nice and informative to my docs so they want to heal me. BUt when they start talking, keep asking “why”, “what” “how come” try to understand what the words and terms mean, even if you already know them. ask questions, go away, write down more questions then go back and ask them. I have notebooks full of inane questions that I HAD to ask. But yes, get a neurologist and insist that someone sends you for a MRI brain and brain vessel scan, also it enquire after blood tests for coagulation and AntiPhospholipids. Vasculitis and APS are common autoimmune illnesses that tie in with others. Don’t let them forget you. TIA’s suck. So do strokes. x

I’m sorry. I didn’t know you were in the hospital.. Are you still there? I am in the U.S. in Kansas. I do have anti-phospholipid syndrome, Factor V Leiden (blood clotting disorder) Thank you so much for all of these pointers you are giving me. I will do all of these things because I am really worried and like you said, worrying only makes things worse. I will be calling my neurologist on Monday and getting an appointment ASAP. I will NOT have that surgery before I get this thing figured out. It sounds the same as yours, and it could also be causing my hip problem. This being sick is for the birds. I’m about damn sick of all of it, and all it does is gets worse. I’m not being negative, it’s just my reality and I’m not too happy to be feeling like I’m 98 freakin’ years old. LOL I”m going to have to go back through all your comments and write everything down. I’ve written down quite a bit, but I don’t want to miss anything. You just may be my guardian angel on Earth. If I go and get these tests done and they treat me before it happens, if that’s possible, you would be responsible for perhaps saving a life, literally. I cannot thank you enough. I may be asking you lots of questions, so if you get sick of me, just let me know that you need a break. I won’t be offended. I’ll let you rest a day or two and then get back at it. LOL seriously, though. I’ll get back to pestering all my doctor’s again. I didn’t know anything else to do or say, but now I’m armed with all this great information you’ve been so kind to share with me. You’re awesome. Hope you get to feeling “better’ and get out of that hospital, would ya? Goodnight, friend. Talk soon. I really must attempt sleep. That’s probably all it will be, but I’ll at least give it a whirl. Peace out! 🙂

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I found that every single successful person I’ve ever spoken to had a turning point and the turning point was where they made a clear, specific, unequivocal decision that they were not going to live like this anymore. Some people make that decision at 15 and some people make it at 50 and most never make it at all.
Brian Tracy